The Mind Body Connection And Somatization: A FAMILY HANDBOOK

2019 Newlove, Stanford, Chapman & Dhariwal, All Rights Reserved In The Recovery Stage your child will return to your usual life and everyday activities. They will have learned skills and activities to help cope with emotion, stress and physical symptoms in everyday life and if symptoms return. The typical recovery for somatic symptoms is steady improvement with some flare-ups or new symptoms. It is not unusual for somatic symptoms to come back. In the recovery phase these symptoms are usually less intense and shorter-lived. This does not mean that your treatment journey has been unsuccessful. It is a time to review what helped during the Integrated Treatment Phase. Our patients often tell us that the journey has been a challenge, but it has also led to personal development. ‘Body Talk: Stories of Somatization’ part #4 can be found here: https://youtu.be/fL0JsgMFee4 The Pathway to Recovery: EXPECTED Recovery Pathway FUTURE NOW NOW FUTURE PEDIATRIC SOMATIZATION: Family Handbook TYPICAL Recovery Pathway 11

2019 Newlove, Stanford, Chapman & Dhariwal, All Rights Reserved PHYSICAL SYMPTOMS Somatic symptoms are the way people often express everyday emotions, for example, crying when sad or blushing when embarrassed. Some symptoms are more unusual and distressing such as problems with walking, blindness and seizures (non-epileptic). In the middle of this range are common symptoms like headaches, stomach pains, tiredness, dizziness or muscle tension. Emotions can show up in different physical ways in different people. For example, before a test some people have a headache and others have an upset stomach. It can be very confusing because there are so many types of symptoms, and different ways they are experienced. Somatic symptoms can occur on their own or with an illness or injury. Over time, new somatic symptoms may also develop. When stress/emotion adds to physical symptoms: o Somatization can happen with many different medical conditions. For example, a teen with epilepsy has seizures due to an electrical misfiring in the brain that sends signals to the body. The pathway used for epileptic seizures is ‘familiar’ to the body and can become the same pathway that stress and emotions are expressed producing stress induced seizures. When stress/emotion causes physical symptoms: o Everyone has stress! But what causes stress is different for each person and is often private to that person. o Everyone’s body has a different way of showing and responding to stress/emotion. In a stressful situation, one person might faint from feeling overwhelmed while another person gets a headache. o Expressing emotions and stress by familiar pathways can also happen with migraines, broken bones that have healed, and lots of other o Sometimes stress and emotional experiences are so private, medical conditions. they get “bottled up” inside without the person being able to recognize their own stress, and their body does the talking for o The body is familiar with sending signals to alert us of medical them through symptoms. symptoms, and it can also become the body’s pathway of expressing EXAMPLEs: SOMATIC SYMPTOM DISORDER WITHOUT A MEDICAL CONDITION: Brenda has always been kind and caring. She has many friends at elementary school and is close with her family. Her mother is currently on sick leave from work. Brenda enjoys being in the school band, but she struggles with math and reading comprehension. During the school year, she felt a lot of pain in her right arm from her elbow to her fingers. Because of her pain, Brenda was not able to take part in academic or school band activities. The results of the medical assessment did not show any causes for her pain. PEDIATRIC SOMATIZATION: Family Handbook stress and/or emotions. 12

2019 Newlove, Stanford, Chapman & Dhariwal, All Rights Reserved SOMATIC SYMPTOM DISORDER WITH A MEDICAL CONDITION (A ‘COMPONENT OF SOMATIZATION’): Raj is an athletic teenager. He plays competitive soccer and hopes to be on a university team in the future. During the soccer season, Raj suffered a concussion. As a result, he had headaches, problems concentrating, tiredness and sensitivity to light. He missed a month of school and playing soccer with his team. The symptoms went away, but during spring break, his headaches returned. Raj was not able to rejoin the team in time for the end-of-season play-offs. CONVERSION DISORDER: Sarah is a high-achieving and responsible teenager who keeps her emotions to herself. She has a small and close group of friends. She recently started middle school and was put in an enriched class for students with strong academic skills. In October, Sarah began having fainting episodes; she would slump over in her desk or fall to the ground. These episodes happened up to twenty times a day. No medical cause was found. Sarah kept going to school, but spent much of the day in the nurse’s office. Two of her friends often left class to be with her. ASSESSMENTS and INVESTIGATIONS We suggest your health care providers take a “walking two paths” approach when they are considering somatization as a possible diagnosis. This means we encourage them to check for possible medical conditions by doing blood tests, scans, etc., and, at the same time, do assessments and treatments for possible somatization. The “walking two paths” approach ensures a medical condition is not missed and also makes sure that treatment for somatization starts as soon as possible if it is part of the problem. A detailed assessment of a child’s social, emotional, and mental health is a necessary part of the comprehensive assessment process. This assessment should include questions about everyday activities and stresses in order to understand how well the child is functioning. Some children with somatization have anxiety or mood difficulties, but others don’t. PEDIATRIC SOMATIZATION: Family Handbook As was mentioned above, somatization may happen on its own or along with a medical condition like an injury or illness. 13

2019 Newlove, Stanford, Chapman & Dhariwal, All Rights Reserved GETTING A DIAGNOSIS The diagnosis of a Somatic Symptom Disorder or somatization is made based on the medical assessment. In completing the assessment your child’s medical doctor or nurse practitioner will: interview you and your child take a history of the symptoms complete a physical exam order and interpret medical investigations and tests include a mental health professional to complete a social emotional assessment discuss the all the results with the mental health professional(s) make a diagnosis The diagnosis is based on an extensive knowledge about medical conditions. It is not made just because a child has stress, certain ways of behaving, past traumas, abuse, or other mental health issues. At BCCH, our care providers often use the term a “element of somatization” when stress and emotions make the symptoms of a medical condition worse. For example, a medical condition like a migraine may have an “element of somatization”. TALKING TO OTHERS ABOUT THE DIAGNOSIS Example: You rush to the Emergency Department because your child has a sudden vision problem after a few weeks of feeling dizzy and having trouble walking. The child is admitted to the hospital and is being cared for by the neurology team. An MRI, EEG and eye exams have all come back as ‘normal’ and the psychologist on the team has been speaking with you and your child about stress. You have been updating other family members and friends about the child’s condition and the care at the hospital. The neurologist and team members explain that the child does not have a serious neurological condition – instead they have diagnosed the child with a Conversion Disorder. The recommended treatment is physiotherapy and counselling. PEDIATRIC SOMATIZATION: Family Handbook We have found that a Team and Family Meeting is very helpful for understanding the diagnosis and starting to make a treatment plan. The people who attend the meeting can vary. Usually one or, better yet, both parents attend, along with the care providers who are involved in the diagnosis and treatment. We encourage children to attend the meeting, but we like to give parents the chance to meet with the team before bringing in the child. That way parents can ask questions that they might feel uncomfortable asking in front of their child. Often people take part by telephone to make it easier for everyone to attend. 14

2019 Newlove, Stanford, Chapman & Dhariwal, All Rights Reserved This example occurs at hospitals on a regular basis. Sometimes friends and other family members will tell parents they should be questioning or asking to get more tests or not leaving the hospital until they have a better explanation, etc. The family might feel pressure to follow these suggestions. Even though the somatization explanation may start to make sense to the family, it might not yet make sense to others. For these reasons, we have found it very helpful to have a discussion about ‘What do we tell other people?’ First, we remind children and families how complex somatization is, and how difficult it can be to explain to others. For the child, we often help them learn to use their own words to explain their condition and treatment. We ask children if they are comfortable sharing more information with the people they are closer to and less information with people that they don’t know as well. We ask them to think of questions they might ask someone who has had the same kind of symptoms and let them think of answers to give if they are asked similar questions. We follow the same process with parents. This gives them a chance to ask more questions and clarify their understanding of the diagnosis and the treatment plan. We remind families that having a clear, simple explanation to give when others ask questions will help to stop the spread of wrong information or unhelpful rumors. EXAMPLES OF CHILD AND YOUTH EXPLANATIONS: Example 2: I went to the hospital because the symptoms from my concussion seemed to be getting worse instead of better. The doctors ran some more tests. They said I am recovering from the concussion; and the symptoms are not caused by my injury. The symptoms are probably related to the things that are going on in my life because stress and emotions can be expressed physically. They taught me some ways to manage pain that are helping me. I am also learning how my stress affects my body and some better ways to deal with stress and other things that are bothering me. EXAMPLES OF PARENT EXPLANATIONS: Example 1: We were really worried when our son, Jack, was having trouble walking and talking. The doctors at the hospital asked us a lot of questions and ran a number of tests. The good news is that they did not find any serious medical condition or injury. They explained that Jack was experiencing somatic PEDIATRIC SOMATIZATION: Family Handbook Example 1: I went to the hospital because I had trouble seeing and walking and my parents were really worried. The doctors did a lot of tests and found out that I don’t have a really serious (bad) medical condition or injury. I am doing some physiotherapy to help with walking and I’m finding out why my body is having these symptoms and learning ways to get better. 15

2019 Newlove, Stanford, Chapman & Dhariwal, All Rights Reserved symptoms – sometimes called Conversion Disorder. So these symptoms are not caused by a brain tumour or encephalitis. Instead, it seems like he is experiencing stress and sadness; and, since it’s hard to talk about it, his body is doing the talking for him. Jack is having physiotherapy to help improve his walking and balance and talk therapy to find better ways to deal with his stress. We are all still watching Jack closely. Example 2: We were concerned that our daughter Emma’s concussion was not healing and that her symptoms seemed to be getting worse instead of better. We took her to emergency and they ran some more tests. They went over the symptoms and asked about any stress in Emma’s life. They explained that she has probably recovered from the concussion, but that the headaches are somatic symptoms. So Emma is experiencing real and painful headaches but not because of the concussion - they seem to be related to stress and emotions. We started to talk to her some more and realized that she is really stressed about school and sports. They taught Emma some ways to manage the pain and also encouraged us to talk to the school and her coach. Emma is also doing therapy to help her cope with stress in a different way and to be able to talk about emotions instead of bottling them up. Families often tell us that members of their support group or extended family do not ‘believe’ the diagnosis and this adds more stress to child and family who are working on treatment elements. We suggest that you ask these individuals to consider meeting with the provider or team to allow them to hear how the diagnosis was made and to respond to any questions they may have. Families might want to take the time to do a self-check to see where they are in terms of understanding and accepting the diagnosis. You may still have questions and concerns that your providers can help answer AND also be ready for treatment planning. PEDIATRIC SOMATIZATION: Family Handbook UNDERSTANDING DIAGNOSIS and READINESS for TREATMENT 16

2019 Newlove, Stanford, Chapman & Dhariwal, All Rights Reserved PEDIATRIC SOMATIZATION: Family Handbook Families might want to take the time to do a self-check to see where they are in terms of understanding and accepting the diagnosis. Take a few minutes for you and your child to separately do the self-check. Share this information with your team or provider so they can understand what you or your child might need in the diagnostic and treatment planning process. For example, you may be ready to start treatment planning AND still have questions or concerns that your provider can help answer. This self-check tool can help the flow of open communication between families and providers. 17

2019 Newlove, Stanford, Chapman & Dhariwal, All Rights Reserved MAKING A TREATMENT PLAN WITH YOUR TEAM Some children and families feel ready to start the treatment process after the diagnosis has been given and others feel more hesitant because they are still struggling with the somatization diagnosis. In either case, we like the concept of ‘walking two paths’ that we talked about earlier. ‘Walking two paths’ means your child will continue to have medical assessments, investigations and treatment if these are needed, and, at the same time, start treatments that are useful for possible somatization. It is important for everyone to learn about the mind-body connection and how to manage stress. It is important that all team members communicate and work together. Your child’s treatment plan is made especially for your child. It is highly individualized and it will change over time as needed. Different care providers are often involved in different elements of care. PEDIATRIC SOMATIZATION: Family Handbook Once a diagnosis has been made or we understand there is an element of somatization, it’s time to make a treatment plan. We make a personal treatment plan for each child and use Integrated Treatment Strategies section of the BCCH Pediatric Somatization Model of Care as a guide. 18

2019 Newlove, Stanford, Chapman & Dhariwal, All Rights Reserved EXAMPLE: a school counselor may help manage school work a physiotherapist can help with movement and returning to activity a counsellor or psychologist could help to understand stress and the mind body connection We focus on recovery so that children can return to or build a meaningful and rewarding life, even if they continue to have symptoms. We find that when children get back in their ‘normal’ routine, (even if they continue to require some supports), it helps their overall recovery. When children are away from their friends and activities and they worry about getting behind in schoolwork, their symptoms often become worse. At the end of the handbook there is an ‘Integrated Treatment Family Worksheet’ you might find helpful. PEDIATRIC SOMATIZATION: Family Handbook In the next Part of the handbook, we will walk through each Integrated Treatment Strategy with a description of what that strategy is all about. We also include a list of actions and goals for each strategy. 19

2019 Newlove, Stanford, Chapman & Dhariwal, All Rights Reserved PART II: TREATING SOMATIZATION TREATING THE MEDICAL CONDITION(S) DESCRIPTION As we have mentioned, we take a “walking two integrated paths” approach. This means that we encourage medical assessments and treatments for any known medical condition(s) at the same time as ensuring appropriate treatments for a somatization element. If your child has a medical condition connected to the physical symptom(s), it’s clearly important to treat the medical condition (e.g., a concussion, inflammatory bowel disease, asthma, etc.). And it’s also important not to use medications or treatments that won’t be helpful or may even cause harm. Even if we cannot find a medical condition, we still like the child to have regular appointments with a physician. This ongoing care may range from checking in a couple of times a year and doing a re-assessment when new symptoms emerge, to weekly check-ins. If new symptoms arise they should be assessed. ACTIONS Ask questions if needed to understand why a certain medical assessment is or is not being done. Make sure your child is treated for any known medical condition. Arrange for a medical provider to be involved and do routine follow-up visits. GOALS To treat any medical condition that is identified. PEDIATRIC SOMATIZATION: Family Handbook Arrange for further medical assessments for new symptoms or changes in symptoms. 20

2019 Newlove, Stanford, Chapman & Dhariwal, All Rights Reserved THE STRESS VULNERABILITY MODEL Physical symptoms often arise due to the combination of two things: 1. Biological vulnerability (like genes, illness, and injury) 2. Stress (everyday pressures such as work, school, and performances as well as how we think or feel about them) Room For Stress Room For St

THE MIND BODY CONNECTION: THE MIND BODY MESSAGE SYSTEM The mind and body are amazing, always "talking" to each other and cooperating. The central nervous system (including the brain) connects to organs, blood vessels and muscles (the body) through very complicated back-and-forth signals using many different types of hormones and chemicals.